Do Not Resuscitate

Mike Gale was dead for four minutes before being revived without any complications. But he is in the minority. CPR can be a brutal process - in hospital, the survival rate is around 15 per cent.

Complicating matters - in many cases, doctors don’t know how the patient feels about resuscitation. If they have formal documentation, it often can’t be accessed in time, meaning they may be brought back to life against their wishes.

Do the benefits outweigh the risks and can you decide your own fate? This week on Insight, we look at how people can re-claim this power, when it’s wise to use CPR and when you’re better off without it.

NSW Health Resuscitation Plans

NSW Health released a policy with standard adult and paediatric resuscitation plan forms in 2014. NSW Health also has guidelines on using advance care directives and on end of life care and decision making. Read the plans here.

Monica's Advance Care Directive

An Advance Care Plan (ACP), also known as an Advance Care Directive (ACD), involves thinking about and planning for your end of life care.

Episode Recap: You Say

Scroll to read a selection of your comments on this episode

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Meet the Guests

Zara Grayspence

"They all expect me to live to 100…they've got six years, so we don't discuss it."

Leanne Hartley

"If I'm going to come back and all I'm going to do is eventually get Alzheimer's or dementia or be less than I am, thanks but lights out for me please."

Jess Holmes

"It’s not about me, it’s not about whether I’ll cope with the grief of losing my child, it’s about what’s right for him."

Monica Hayes

"I understand I'm dying… All I ask is that I be allowed to die without any medical intervention."

Zena Najm, Emergency Department Nurse

"I don’t think people understand how brutal CPR is."

Prof. Paul Middleton, Emergency Medicine

"I think that people have an absolute right to say they don't want to be resuscitated whatever the reason is."

Dr Charlie Corke, Intensive Care Unit

"You just have to do it…you either resuscitate or you don't resuscitate. You can't half resuscitate."

Transcript

JENNY BROCKIE: Welcome everybody, good to have you here tonight. Mike, a few years ago you were dead for four minutes, is that…

MIKE GALE, RESUSCITATION COUNCIL AUSTRALIA: Three or four minutes, yes.

JENNY BROCKIE: Tell us what happened?

MIKE GALE: I'd had my spleen removed for a clotting disorder and post operatively while I was being cared for in the ward I was being given morphine, a morphine derivative for pain relief, and I think I was a little bit sensitive to it because at one point I stopped breathing.

JENNY BROCKIE: So what happened when you stopped breathing?

MIKE GALE: Well my wife was came into the room and found me blue, my wife's a nurse, and she immediately pressed the bell and started mouth to mouth and chest compressions on me and from there the team arrived and they did about three to four minutes worth of advanced life support techniques, gave me some adrenaline and I then started to recover.

JENNY BROCKIE: Now you had CPR?

MIKE GALE: Yes.

JENNY BROCKIE: Which is cardio pulmonary resuscitation?

MIKE GALE: That is correct.

JENNY BROCKIE: And you'd trained your wife in CPR, you're a trainer?

MIKE GALE: Yes, it about six months earlier she had just done an advanced life support course but also two of the team that were responding from the hospital were also people I'd trained about thirty days prior to my cardiac arrest.

JENNY BROCKIE: So the team that brought you back?

MIKE GALE: Were people I'd trained.

JENNY BROCKIE: No pressure for them at all?

MIKE GALE: No, none whatsoever.

JENNY BROCKIE: Now can you show us what they did to you?

MIKE GALE: Yes.

JENNY BROCKIE: We've got a version of you here on the table.

MIKE GALE: Yes. So I'll let Dave take it from the moment that there was a collapse.

JENNY BROCKIE: Okay.

DAVE: Mike, Mike.

JENNY BROCKIE: Okay, so he's checking to see if there's…

MIKE GALE: What he's actually doing is opening the airways, checking for any obvious breathing and while he's doing that he's simultaneously checking for a pulse. Because he didn't find that he's immediately commenced chest compressions.

JENNY BROCKIE: Okay, now how hard are those chest compressions?

MIKE GALE: About five centimetres deep which about is a third the total chest diameter so it is a long way in.

JENNY BROCKIE: And a lot of pressure?

MIKE GALE: A lot of pressure, yeah.

JENNY BROCKIE: Yeah.

MIKE GALE: And the first priority once you've detected a cardiac arrest after chest compressions is to attach a defibrillator because that's one of the most common causes of cardiac arrest in adults, particularly out of hospital, it's not an uncommon thing all the way throughout, so a shockable rhythm much, much easier to treat.

JENNY BROCKIE: What does that mean?

MIKE GALE: So what he's done now he's charged the defibrillator.

JENNY BROCKIE: What can go wrong?

MIKE GALE: The people who've had this done with a beating heart have had no adverse effects. As you get older with more fragile ribs there's a risk of a broken rib and regaining consciousness from it, I know for a fact your chest aches for a bit. But complication wise there's very, very few.

JENNY BROCKIE: And how long do you keep doing this for before you decide to either give up or, you know, before you get a reaction?

MIKE GALE: Sometimes it can be ten, twenty, thirty minutes, then that's when it looks to be futile, that's when you start to think about giving up.

JENNY BROCKIE: Okay, thank you very much for showing us that. Thanks Mike. Grab a seat again. So Mike, after all that was done to you, what was the next thing you remember?

MIKE GALE: I remember being asked a number of questions, it was like waking up from a deep sleep and one of the questions then was my wife speaking in the background one of my colleagues, one of the guys I taught, they said do I know who that is and I said yep, that's the wench, and at which point…

JENNY BROCKIE: The wench?

MIKE GALE: The wench, at which point the room went quiet and people thought that I was a bit confused because you can wake up a bit confused, a bit disorientated, my wife said absolutely not, that's Mike, he's back.

JENNY BROCKIE: How were you afterwards, physically?

MIKE GALE: My chest was sore, I remember that vividly waking up and feeling like there was still someone sitting on my chest. My - the throat was sore as well because I'd actually had a small tube put down the back of my throat but then I woke up very sort of suddenly and was wide awake and very sort of disorientated transiently but then after that recovered, took about five minutes and then back to normal.

JENNY BROCKIE: How weird was it to be a trainer in this sort of stuff and have it happen to you?

MIKE GALE: Um, I call it my experiential learning exercise so I've actually experienced what I teach for my patients.

JENNY BROCKIE: Who here wants to be resuscitated no matter what, you know, if something like that happened, yeah, Diana?

DIANA YU: Yeah, I think it might be my conservative values at play because I've always grown up just believing that life is so valuable, the most valuable thing there is, so I just don't think there'd ever be a situation where I wouldn't want to be resuscitated even if there were those effects like you've discussed.

JENNY BROCKIE: Like a lack of oxygen to the brain?

DIANA YU: Yeah, exactly, I'd still want to be resuscitated.

JENNY BROCKIE: Okay, let's have a look at how CPR is portrayed on the screen.

“ER” VIDEO PLAYED.

JENNY BROCKIE: Zena, you're an emergency nurse, is that what it's like, people roll over with a smile at the end and say "you saved me"?

ZENA NAJM, EMERGENCY DEPARTMENT NURSE: I don't think anyone's actually told me I've saved them before to be honest. I can't watch medical shows with my friends because I just tend to ruin it for them. I'll sit there and I'll say that's not right, that's not right. I mean the compressions obviously are realistic and a lot of the time in the shows they'll show the flat line and then the patient will get shocked or defibrillated as you mentioned earlier, but as clinicians we know that you can't actually be shocked if you're flat lined. You need to be in particular rhythms and this show was pretty good, they mentioned VTAC which is a rhythm that you can potentially be shocked in. But most rhythms in the TV shows you can't effectively be shocked in.

JENNY BROCKIE: What sort of things can happen to patients? What sort of things?

ZENA NAJM: Yeah, it's quite brutal and I don't think people understand how brutal CPR is and how brutal resuscitating somebody is as well minus the CPR. So you feel like you're crushing that person's chest while you're doing it to be honest.

JENNY BROCKIE: And are you sometimes crushing that person's chest?

ZENA NAJM: Yeah, you do break ribs, yeah, you do break ribs unfortunately. When you know that their quality of life is not going to be improved after resuscitating them, then that's the most distressing part.

JENNY BROCKIE: So what categories of people distress you most?

ZENA NAJM: More so the elderly when their quality of life prior to coming into hospital is not, is not high at all and so you sort of, you're resuscitating this person knowing they're probably not going to make it at the end. It's very upsetting, it's very, very upsetting.

JENNY BROCKIE: Ken, you're an intensive care specialist, how accurate are the TV portrayals of CPR do you think?

DR KEN HILLMAN, UNIVERSITY OF NEW SOUTH WALES: Yeah, there was a lovely study some years ago where six people watched television for six months and they recorded every episode of CPR and they recorded a 70 percent survival rate and in fact the survival rate is more like 15 percent.

JENNY BROCKIE: 15 and then how did that 15 percent fare afterwards?

DR KEN HILLMAN: Well, the 15 percent are people like Mike, for example, who are younger and have, have a condition that can be easily treated. But the rest of the patients are people that are dying naturally and normally and the way you die naturally and normally is that your heart stops.

JENNY BROCKIE: So people are coming in and they're either terminally ill or they've got not very long left and they're still getting CPR if their heart stops?

DR KEN HILLMAN: Yes, well that sort of seems the fall back position because you're not too sure initially. So, so it's often started until you find out a bit of background of the patient, what sort of health they had beforehand, their age, whether their condition is sort of reversible or treatable.

JENNY BROCKIE: Paul Middleton, you run an Emergency Department, you also educate medical staff in CPR, why are the survival stats so low?

PROFESSOR PAUL MIDDLETON, UNIVERSITY OF SYDNEY: Out of hospital cardiac arrests often happen for a particular reason, often they happen suddenly, somebody's there and they drop and that's often due to a rhythm in the heart and that's the rhythm that won't allow the heart to beat properly and they're the ones that are often reversible if you get somebody there very quickly.

JENNY BROCKIE: How quickly?

PROFESSOR PAUL MIDDLETON: Well, once your heart has stopped every minute that goes past there's a 10 percent decrease in survival. So at ten minutes…

JENNY BROCKIE: You're dead?

PROFESSOR PAUL MIDDLETON: Not many people left. But at three to four minutes, as in every case, there's hypoxic brain damage or brain damage due to lack of oxygen, so really what you need is everybody to be trained in CPR for those occasions when that happens in the community and there are 30,000 Australians a year who have a cardiac arrest and 10 percent of them survive. CPR is all about making the chest act like a pump and pumping some blood not as effectively as the heart does normally but pumping the blood around to the brain and allowing it to survive for longer until somebody gets one of the defibrillator machines that allows the heart actually to be put back in the normal rhythm again and work properly. In hospital, as Ken has alluded to, the mechanism is often very different, they are often really sick first with something else, and often the context is quite different.

JENNY BROCKIE: Leanne, you don't want to be resuscitated under any circumstances. Why?

LEANNE HARTLEY: That's right. If I'm going to come back and all I'm going to do is eventually get Alzheimer's or dementia or be less than I am, thanks but lights out for me please.

JENNY BROCKIE: So even if you were walking down the street perfectly fine, had a heart attack for whatever reason?

LEANNE HARTLEY: Which would determine that I wasn't perfectly fine beforehand.

JENNY BROCKIE: That's right, but people have heart attacks and go on to live very long and happy lives?

LEANNE HARTLEY: How can you, you can't guarantee that.

JENNY BROCKIE: You can't guarantee it but you can't guarantee it won't be the case either?

LEANNE HARTLEY: Oh, look …

JENNY BROCKIE: Especially at, what are you 55?

LEANNE HARTLEY: Maybe not quite that.

JENNY BROCKIE: I just wonder where this passion comes from though?

LEANNE HARTLEY: It's from seeing older people, what the older generation, how they're living, what their lifestyle is, what their quality of life, from my point of view. Not, I think generationally the people who are currently in their 70's and 80s and 90s, etc, they lived a different sort of life. They didn't know what it was to be like to have lots of people in their 70's, 80's and 90's, most people died really young and all they wanted to do was get to the goal of living longer than auntie May. Whereas we've seen the results of living longer than auntie May and it ain't pretty all the time.

JENNY BROCKIE: Zara, I want to ask you about this because you're 94. What do you think listening to somebody saying, you know, it's not pretty when you get old and, you know, you don't want to be, you don't want to be resuscitated. What's your feeling about that?

ZARA GREYSPENCE: Because she doesn't know, she's just surmising that something unpleasant will happen. I find every day or every couple of days, or once a year, something pleasant happens to me.

ZARA GREYSPENCE VIDEO PLAYED.

ZARA GREYSPENCE: This morning I got up a little bit earlier than I normally would, I have a list and it’s called “My can do Program.” And what I know I can do myself, I never go out without lipstick and earrings on, so I got myself dressed up, till last year when I was 93, I was driving and now I have to walk out to get a bus. Well, to be 94 is a challenge, I’m concerned that I might have a fall and that’s when, if I did have a fall, I think that might be the end of me. I would like CPR, I would like to keep going.

“Yes, I think that will tied me over, keep me towards my goal – 100. I live by myself, I can do as I like and one good thing is, this morning when I got out of bed, I went in the shower, I just walked around and did my medication in the nude, so – you can’t do that in a nursing home, they would expel you.

JENNY BROCKIE: Good on you Zara. You said there that you'd want to have CPR. What about the risks when you're 94, you saw what it involves, the pressure on your chest and so on?

ZARA GREYSPENCE: Well I saw all that pressure but I'd be unconscious so I doubt if I'd feel that.

JENNY BROCKIE: What would you say to a doctor who might say to you look, there are these risks at your age, you know, maybe you should have a serious think about this? What you would say?

ZARA GREYSPENCE: Well, I saw a movie once and I think it was Julia, oh, anyway, it was a very ladylike, well-spoken lady and she had the phone to her ear and she was listening and I'm not, I never swear but she looked lovely and the next thing she's: "Oh, piss off", and I thought I'm going to save that up and if anyone…

JENNY BROCKIE: You did save it up?

ZARA GREYSPENCE: -- tells me what to do or what I should be doing.

JENNY BROCKIE: So if the doctor said to you I want you to think about…

ZARA GREYSPENCE: I think I'd say the same rude word.

JENNY BROCKIE: Charlie, you work in intensive care, what do you say to elderly patients about CPR?

DR CHARLIE CORKE, BARWON HEALTH: Well I recognise, as we've heard today earlier, that CPR can be remarkably effective. So everything good has a bad side and there's no doubt that for CPR that it can be utterly fantastic but there's also a really big downside that it can be make death very technological at the end and certainly I see in intensive care quite a lot of people that have had CPR done and turn out very badly.

JENNY BROCKIE: Are you disturbed by the way CPR is used in all cases or in most cases when people stop breathing?

DR CHARLIE CORKE: Yes.

JENNY BROCKIE: Or their heart stops?

DR CHARLIE CORKE: But I also, as the other doctors have said, have the view that this is a choice for people. If they want it, it's there for them, but I think there's not a lot of understanding of what, what the consequences are and the consequences for people who are elderly and very sick and very frail are really quite dreadful.

JENNY BROCKIE: Jeffrey, you're a paramedic, do you always perform CPR when there's a cardiac arrest?

JEFFREY ANDREW, PARAMEDIC: Probably one of the things in our situation is that transition of care that goes from the community and certainly our best results are where CPR has been done straight away and if there are defibrillators in public places then we come along and we transition to an advanced life care perspective and then we try to get them to hospital. The time that we move them it becomes CPR is very ineffective and that's where we sort of, there is a period where we give the similar drugs and the things you saw there in the field and that's where it comes to a point where we've got to sort of make a decision if they're effective or not.

JENNY BROCKIE: Are there times you don't want to do it because of the person's age or because of the risk of permanent damage if they are brought back? Are there times when you think I don't know if I should be doing this?

JEFFREY ANDREW: That's definitely the case, yeah.

JENNY BROCKIE: And what sort of situations would those be?

JEFFREY ANDREW: So probably the ones where you do see like, you know, end organ failure so, you know, the people who are, it could be liver, lungs or, you know, you see the things there that they're on oxygen at home and obviously haven't got out of the house for a long while or, you know, when the orders aren't in place for someone in a nursing care facility.

JENNY BROCKIE: And are you obliged to do it in those situations if you're called?

JEFFREY ANDREW: Yeah. Look, it's tough because we will have situations where the family may have called us because they don't know who else to call, and even they will start to say look, I don't think they'd want to go through this and there's a difficult conversation. We'll tend to probably resuscitate to a point where, you know, we're getting a feel of how things are going and there's got to be some clinical judgement but legally it does get very tricky and it is a grey,muddy area that, you know, it would be good if over time there's a bit more…

JENNY BROCKIE: Clarity?

JEFFREY ANDREW: Clarity for paramedics I guess.

JENNY BROCKIE: Okay. Ken, what the rules with resuscitation in an emergency? Is it clear-cut who gets it and who doesn't in a hospital?

DR KEN HILLMAN: No, it's not at the moment and I guess that's related to the fact that at the moment not many people are sort of expressing a wish that they don't want to be resuscitated.

JENNY BROCKIE: Charlie?

DR CHARLIE CORKE: You know, is this a person who wants to live at any cost, whatever it takes they would want us to try? Or is it someone who's, who values independence and quality and dignity and doesn't want, would be horrified if we were to be putting them through high technology at the end of their life?

JENNY BROCKIE: But realistically what chance do you have of getting across some of that amount of deal if you're in that, you know, sudden emergency situation?

DR CHARLIE CORKE: In a crisis it's incredibly difficult which is why it's so important to do it before the crisis, that the person expresses their values, what's important to them, how they think about life and their life and their end and that they do it not in a crisis well before with their family, with their GP, and that they come packaged with a who they are and what matters.

JENNY BROCKIE: There are still grey areas even if you've got clear instructions from a patient, you're still making a lot of big decisions here when you're working out what to do. Charlie, have you ever brought anyone back and regretted it?

DR CHARLIE CORKE: Yes. I recall a patient who I, who arrested, you know, in front of me in a situation where all of the equipment was readily available and I assessed that the outcome would be good. It was brought to my attention that she had written a very straightforward "I don't want to be resuscitated" order and I was in a dilemma about it what to do but it was so obvious that it would do well that I felt that I should do it.

JENNY BROCKIE: You overrode it?

DR CHARLIE CORKE: I overrode it because of the circumstances.

JENNY BROCKIE: And what happened?

DR CHARLIE CORKE: And the circumstances were very good and she turned out extremely well, perfect recovery.

JENNY BROCKIE: How did she feel about that?

DR CHARLIE CORKE: She was very cross with me and it was interesting that it wasn't about outcome, it was about respect, my problem was that the not for resuscitation order didn't have any, any values around it. And what drove it, what was the behind the decision, was it about quality? Was it about worry about poor outcome? But in fact what it was was something that I hadn't anticipated at all, it was about no one ever listens to me and you haven't listened to me either and you know, she was pretty cross with me.

JENNY BROCKIE: Was it mitigated by being alive at all?

DR CHARLIE CORKE: No, I don't think so. And I just think it shows, and I think it shows how different everybody is and how important this stuff is.

JENNY BROCKIE: Leanne, how would you have reacted if that had happened to you?

STEPHEN HARTLEY: Sued him.

LEANNE HARTLEY: I would have been effing furious.

DR CHARLIE CORKE: Yes, I think it was her cousin. When I was listening to her I was thinking I think I know this.

JENNY BROCKIE: Paul, have you ever done CPR and regretted it?

PROFESSOR PAUL MIDDLETON: I have. I've resuscitated a young girl who was 18 or 19 who had had a cardiac arrest because of a really bad asthma attack but instead of calling the ambulance her parents were so terrified they put her in the car and drove her to the hospital and she had a cardiac arrest on the way in the back seat of the car. Now they didn't know what to do so they arrived and we immediately went into resuscitation mode and we started doing CPR and she had a shockable rhythm so I shocked her and her heart started to work again, which all seemed like a good thing until later when I saw a photograph of her with profound brain damage and, you know, I sort of, you know, I think I probably did regret it then. Her parents showed me the photograph and they were happy because they had their daughter. But you know, I know that if that daughter was not brain damaged I'm not sure she would have wanted the outcome.

JENNY BROCKIE: And has that affected you since in terms of your decision making in a situation like that?

PROFESSOR PAUL MIDDLETON: Absolutely. The one of the things I've taken from tonight is certainly all the doctors here are similar in that we think a lot about this. We don't make snap decisions. We hope we make right decisions but what it's made me realise is that there are, it's not the homogenous thing, it's not all the same. You know, the difference between what I deal with and what I try to push with our charity "Take Out Australia" that all of Australia is being trained in CPR for the person on the street who falls over is completely different to the people in hospital, with terminal illness, with things that are not survivable without profound impairment, and my decision making is much more subtle than just yes or no to resuscitation.

JENNY BROCKIE: What if the relatives are saying somebody doesn't want to be resuscitated but there's no paperwork, what do you do then?

DR KEN HILLMAN: It's more often that all the relatives are saying do it actually.

JENNY BROCKIE: That never happens?

ZENA NAJM: I've never seen that happen, it's always, do it.

JENNY BROCKIE: It's always the other way?

ZENA NAJM: Yeah.

JENNY BROCKIE: Ken, how complicated can it get with families in hospitals where you know, you're trying to work out what to do?

DR KEN HILLMAN: Yeah, most, most families are pretty good actually. I mean every so often you get, you know, you know, some family who'll say we want everything done and you need to continue but that's pretty rare. It often has to occur over days. It can't be something that, you know, you know, that can be initially accepted by the family and so you have to sort of cope with sometimes anger, sometimes grief, is sometimes tears. But most people eventually say no, this is not what this person would want.

JENNY BROCKIE: Zena, you were nodding your head, you've been in that situation?

ZENA NAJM: I have, yes, and I suppose from an emergency perspective it is a little bit different from the intensive care situation. In the Emergency Department you don't have that time to build that rapport and trust with the family members so it's a lot of very, very quick, quick thinking and quick decision making. But yeah, we have come across scenarios where the family do want you to do everything despite, despite what that person wants.

JENNY BROCKIE: Yes, Paul?

PROFESSOR PAUL MIDDLETON: I just wanted to, I suppose, illustrate a little bit because there are two sort of extremes. I've been in an Emergency Department in London where a youngish guy came in but he came in with something like fifteen of his friends and they physically threatened the staff to say don't you dare let him die or we'll kill you. Now that's a fairly extreme sort of argument, but there are many people that get really angry because it's so sudden, in our department in our area, that they just can't deal with it. The other end the spectrum is when you have a child and we actually, we actually go out of our way often to keep the family in the resus room when we're resuscitating a child, when we're doing CPR, and we try to get a senior nurse to stand with them and explain what's happening. But often we know that they will do better afterwards when they've seen everything's been done.

JENNY BROCKIE: Jess, I want to ask you about this because you decided to sign a DNR order on behalf of your three year old son Henry. Why, tell us why.

JESS HOLMES: Well it was the first time Henry had an acute illness, the first time he was intubated and he was flown to Melbourne but sort of a bit of history on Henry was that he had a stroke in utero so he falls under the, falls under the banner of cerebral palsy. So you know, as we got the diagnosis over a period of time and he was born with Cataracts so he had poor vision and also epilepsy, asthma, respiratory illnesses, peak fed, dislocated right hip, scoliosis. So if you put it all on paper, you know…

JENNY BROCKIE: He was battling a lot of things?

JESS HOLMES: Yeah, but day-to-day when he was home and well his quality of life was fantastic. So first time he became acutely unwell and was flown from home down to Melbourne, in ICU he crashed, you know, he'd been there probably half an hour and crashed and to watch, we were on holidays at the time so I had to sort of rush, Paul and the kids were still on holidays, and for the first time to be exposed to potentially what needed to happen and watching that, I actually for a second stepped back and forgot it was my child and watched the people do their thing and the ICU intensivist was there watching his team. So once again they got him going again, they didn't have to perform CPR at the time. It was pretty full on, it was like an operating theatre to get him going and then doctors here would understand, he was on as oscillator for a couple of days.

JENNY BROCKIE: What's an oscillator?

JESS HOLMES: It's a machine, looked like they pulled it out of my dad's shed. It's a big machine that has, it's like pistons on it but it's going boom, boom, boom, boom and Henry was actually, they were keeping his lungs open constantly so they could just, the air could circulate through. So then I had to ring Paul to say you need to get here because potentially you might be saying goodbye to your son. So he came, had to leave the kids on holidays, and then we had a meeting the next morning. So I said I needed to be that when that time comes it's not about me, it's not about whether I'll cope with the grief of losing my child, it's about what's right for him and that was always our utmost priority.

I said if I make it about me I'm up to discuss it with you tonight and he goes home and has no quality of life, I couldn't live with that. He ended up being six and a half when he passed away. So he passed away, it will be two years in December and we had, once we could fill out that form and it was, you know, we spent a couple of hours that day going through and it's not, I mean you sort of talk about not for resuscitation, there's many steps to get to that point. So you know, first step it might be oxygen. Well you're going to say yes. The next one might be whatever so we had to work through, there could be potentially ten steps but when it gets to the point where goes you're going to be jumping on this little boy's chest, Mike was saying potentially break ribs, you know, they can put a needle in his bone, like they were all things they said you just don't want to go down that path for a child, like Henry. If I was talking about the other two children Gretel and Billy who are healthy 11, 10 year olds, I said that potentially could be a different conversation for myself.

JENNY BROCKIE: How did friends and family react to the decision? Did you tell them?

JESS HOLMES: No, we didn't share it a lot with many people outside of, I think that's, it's quite a personal journey and so Paul and I, yeah, shared it with a couple close, you know, friends, but probably didn't share that element of it with too many people and I found the best part of about having it, signed it, you could almost put it to the side and you could always any time we ended up in hospital, which I couldn't even tell you how many times he ended up in hospital.

JENNY BROCKIE: He was rushed to hospital a number of times after that?

JESS HOLMES: Yes, intubated probably six times, you know, flown out. I could walk in and say we have a not for resuscitation order, good, now we are dealing with now? And so once we could give that to the necessary people…

JENNY BROCKIE: You had that out of the way at least?

JESS HOLMES: And they'd go, it would be a relief to the doctor because you always know them and they go oh, good, righto, what are we dealing with now? It actually helped so much in knowing that they were always going to do what they could do within the certain parameters.

JENNY BROCKIE: Within the parameters, yeah.

JESS HOLMES: Yeah, and he would seriously be that unwell and they'd sit back up in the lounge room and just say where have you guys been? And be able to partake again and for someone who he couldn't see, couldn't see, couldn't talk, but he was such an integral part of our family and…

JENNY BROCKIE: He looks like an integral part of the family in the photos.

JESS HOLMES: He was just an incredible little boy that took us on an incredible journey.

JENNY BROCKIE: How do you feel about the decision now?

JESS HOLMES: I feel, I feel really good about it. But at no stage did I waiver from the decision. And the other side is that Henry died beautifully. I could not have asked for a better ending to his life. He had a meck call, it was 1 o'clock in the morning and it was Sunday night, it was just me and I actually just held him to stop myself. I said just stop, he's dying so do what you can just to keep him for the minute and then I said ring Kate, the paediatrician. We basically had to make the call that, yes, he was now palliative. Said to ring Paul, you need to bring the other kids down, this is where he's at, but if it had actually happened the way it potentially could have, it would have been yucky.

But then once we got him settled, took him off the BiPAP, turned the monitors off we ended up having four days with him and we were all in the room and Paul and I were holding his hand and for him his lungs had run out of puff but his heart didn't know how to stop. But I wouldn't have made the heart work harder when the lungs were still going, don't do this because I've sort of had enough. I went over to him and I said well done little mate because I could not have asked any more of that little boy. So yeah, I think if every child can have a Henry Holmes ending that's what I'd wish for.

JENNY BROCKIE: Monica, you've had a discussion with doctors about resuscitation, why?

MONICA HAYES: On 29th of April this year I was diagnosed with motor neurone disease. I've been a perfectly healthy woman for 62 years, no medication. I made an advanced care plan before I had my diagnosis.

JENNY BROCKIE: So you'd done it before?

MONICA HAYES: Because I didn't want to be driven by the knowledge about my disease. I also knew that I was facing particular complications around my capacity to breathe and swallow.

JENNY BROCKIE: So what is in that advanced care plan?

MONICA HAYES: I don't want any machines keeping me alive, so all I ask is that I be allowed to die without any medical intervention. I still do yoga, I was recently on an outback tour and climbed up the Flinders Ranges. I did struggle for nutrition but I enjoy life.

JENNY BROCKIE: So who have you made it clear to? Who have you told about this? Who knows what you want?

MONICA HAYES: My medical power of attorney sits beside me.

JENNY BROCKIE: And that's Melissa, your friend?

MONICA HAYES: Melissa, who was my surrogate daughter before I had my own children. I have, Geoff and I have a son and a daughter but I wouldn't put them through the decision about keeping me alive.

JENNY BROCKIE: About what choices to make?

MONICA HAYES: I wouldn't trust Geoff.

JENNY BROCKIE: Why wouldn't you trust Geoff?

MONICA HAYES: He'd want to keep me alive and so…

JENNY BROCKIE: So you very deliberately chose Melissa for those reasons?

MONICA HAYES: I thought a lot about advanced care planning for ten years. I've helped old people.

JENNY BROCKIE: Melissa, how did you feel about being asked to take on this responsibility?

MELISSA OSBORNE: It's gone through stages. Initially it was just a piece of paper and I was on it and I accepted it and I read through it and when Monica was diagnosed with motor neurone disease it hit me like a brick wall. I was a little bit overwhelmed, I started to do a little bit of research about what was involved and what it meant and even, I've got a background in banking and finance and I've recently graduates as a registered nurse, that still didn't prepare me for the future because giving, being given a piece of paper and understanding what it means doesn't give you life experience. So I was trying to prepare for something that could happen in the future when I hadn't experienced it.

JENNY BROCKIE: How do you feel about it now?

MELISSA OSBORNE: Monica being a very intelligent person who understands what she's doing has an advanced care directive in place which says what she wants. So…

JENNY BROCKIE: So it's clear?

MELISSA OSBORNE: Very clear.

JENNY BROCKIE: Geoff, how do you feel about this?

GEOFF FARY: It puts it into an entirely different perspective and dimension when your spouse is diagnosed with a, a fatal incurable disease. So I can perfectly understand why Monica didn't nominate me.

JENNY BROCKIE: Is she right about you, that you wouldn't…

GEOFF FARY: -- the family to be her medical powers of attorney because our decision making would be clouded with emotion. So we understand that and we accept that and we respect her wishes.

JENNY BROCKIE: What's that, what's the card?

MONICA HAYES: When you do, I feel very privileged to live where I do in Marlin Health in Geelong, we have a respecting patient choices team. I carry this with my, it's a little card with my driver's licence which says I don't want to be resuscitated. My advanced care plan sits under my UR number at the hospital.

JENNY BROCKIE: So if you get admitted to the hospital they know?

MONICA HAYES: My neurologist and those, so leave me alone.

JENNY BROCKIE: So they have no excuse, it's clear, but how clear is it elsewhere in other hospitals, in other places? I mean how do you know if someone has…

MONICA HAYES: It’s not legally binding outside of Victoria. So if I collapse now it doesn't, it isn't operable really.

JENNY BROCKIE: There are a lot of witnesses to you want though.

MONICA HAYES: On record.

JENNY BROCKIE: How many people do have them, Ken? How many people would have done?

DR KEN HILLMAN: Yeah, now this is…

JENNY BROCKIE: What Monica's done?

DR KEN HILLMAN: This is awful, like in all the time I've worked in intensive care I've never seen one. Like I've ever never seen one on a bit of paper, but I've heard a lot…

JENNY BROCKIE: How many years have you worked in intensive care?

DR KEN HILLMAN: Since about 1980.

JENNY BROCKIE: Whoa.

DR KEN HILLMAN: I've never seen the bit of paper with advanced care directives. So that's something that we really need to work on in this country. But having said that, there's a lot of people who, you know, who come in and express wishes about what their partner or what their relative or friend would have wanted.

JENNY BROCKIE: How much do you take on board what the spouse or the child or the person who comes in with them says in terms of what you do?

DR KEN HILLMAN: A lot, absolutely.

JENNY BROCKIE: Okay, so if a spouse says do not resuscitate my wife, you would not resuscitate?

DR KEN HILLMAN: Yeah. In most cases.

JENNY BROCKIE: What did you say Charlie?

DR CHARLIE CORKE: My ex-wife.

JENNY BROCKIE: But serious question though, if, if, if someone says do not resuscitate my, you know, relative - you would take notice of that, if someone say that?

DR KEN HILLMAN: Oh yes, absolutely.

JENNY BROCKIE: Would you Charlie?

DR CHARLIE CORKE: Yes, because I'm taking the best information that I have at the time.

JENNY BROCKIE: At the time?

DR CHARLIE CORKE: And I'd be assessing how that relative was behaving and how, you know, whether it seemed valid.

JENNY BROCKIE: Do you take notice of those Paul?

PROFESSOR PAUL MIDDLETON: It's very difficult because here in New South Wales several years ago when actually with the Ambulance Service we were trying to implement this process of recognising advanced care directives and it was said that you must, or that the Health Department said you must adhere to and recognise an advanced care directive. But then they said but we're not going to say what it should look like, it can be anything. So somebody could arrive, you know, with a piece of torn up paper bag with don't resuscitate me and we would be told that you've got to make your mind up whether that's real or not real and there are lots of cases actually when these things are not real. There are times when people say oh, I don't think they want to be resuscitated and there have been cases when that person may be the person responsible for the fact they're in there in the first places.

JENNY BROCKIE: And what's your legal position then? I mean who does make the call in this situation? Who has the right?

DR CHARLIE CORKE: Well you just have to do it. I mean it's a decision, it's a decision you either resuscitate or you don't resuscitate. You can't half resuscitate.

JENNY BROCKIE: Are you obliged by law to resuscitate?

DR CHARLIE CORKE: I think most of us as medical practitioners feel very conflicted in not doing it unless we have extremely clear instruction not to and the Courts would support that.

JENNY BROCKIE: Okay, so if Leanne has the heart attack and it's made very clear to you that she doesn't want to be resuscitated?

DR CHARLIE CORKE: Yes.

JENNY BROCKIE: Do you stand back and let somebody who you think might have a reasonable chance of recovery or a very good chance of recovery, do you stand back?

DR CHARLIE CORKE: I would but I'd be very concerned to know that Leanne's family were all on board with what Leanne thinks and I don't want them to come and say Leanne was just confused and we don't agree with it at all, that's going to be very difficult. I wouldn't like Leanne's doctor to come and say what on earth have you done, she's always been weird? It would be very…

JENNY BROCKIE: Nothing personal Leanne.

DR CHARLIE CORKE: It would be a very well thought out, well organised decision, that would be terrible and we would be in a terrible position. So it's about having that confidence that this is a, a thought through decision.

JENNY BROCKIE: And if her family says do everything, bring her back and you know she's got a DNR order, what do you do then?

DR CHARLIE CORKE: Well given that, I would argue in that situation we probably don't have enough evidence to feel confident to follow the wishes and therefore I would resuscitate her.

JENNY BROCKIE: What would you do Ken?

DR KEN HILLMAN: The same I think.

JENNY BROCKIE: What would you do Paul?

PROFESSOR PAUL MIDDLETON: I'd stop.

JENNY BROCKIE: You wouldn't do it?

PROFESSOR PAUL MIDDLETON: No. If it really was that clear and in my area it seldom is as we said but if it was that clear then I would respect that.

JENNY BROCKIE: I think you might have a new patient sitting here right now. Ric, do you raise it with people, as a GP?

DR RIC MILNER, GENERAL PRACTITIONER: I do.

JENNY BROCKIE: How do you raise it?

DR RIC MILNER: Well if I'm taking their blood pressure or checking their cholesterol and I'm bored because that's pretty boring, that part of work, I say things like have you ever had any relatives or any friends you know go through an experience of dying that was less than optimal?

JENNY BROCKIE: Might that frighten people if they're having their blood pressure taken?

DR RIC MILNER: I don't put it around their neck. No, it doesn't. They are relieved, particularly if they're elderly and particularly if they've had someone die in Charlie's unit in a long, prolonged death, they don't want that to happen to them and they, they are so relieved that they often go and tell their friends you should go and talk to these people about this.

JENNY BROCKIE: They want the control over what happens to them?

DR RIC MILNER: They want the control and some people do say things that I think are pretty odd but it's documented. It's there and you respect it.

JENNY BROCKIE: That's what they want. Ken, you're working on a project that's trying to predict how long elderly people have left to live. What could that mean for CPR, for decisions around CPR?

DR KEN HILLMAN: Yeah, it would mean if we found someone, for example, that we could find would only have an 80 percent chance of living another six months, it would mean that we'd have, that we'd begin to have these discussions with that patient and their carer. So we'd sort of talk to them about that and say look, we've got data that says that you may not have too long to live, has anyone talked to you about this? And then we need to have that very sort of, you know, that very complex sort of discussion with the patient and the relatives.

JENNY BROCKIE: Zara, have you made your wishes clear to anyone about what you'd like done when you, if you end up going to hospital or if you end up, you know…

ZARA GREYSPENCE: Well, they all expect me to live to 100 so they've got six years, so we don't discuss it. My daughter did ask me at one stage did I, would I like a wooden coffin or a cardboard coffin. So I said oh, don't waste the money on a wooden one, spend it because I won't get it, and that's about all.

JENNY BROCKIE: Okay. Paul, do you have an advanced care plan as a doctor?

PROFESSOR PAUL MIDDLETON: No.

JENNY BROCKIE: Okay.

PROFESSOR PAUL MIDDLETON: I discussed it with my wife and I think we're clear that if I were in a situation as we've discussed I wouldn't want to be resuscitated, if I had a poor quality of life but I have nothing written down.

JENNY BROCKIE: Do you think you should?

PROFESSOR PAUL MIDDLETON: Maybe.

JENNY BROCKIE: What about you Charlie, have you got a plan?

DR CHARLIE CORKE: I most certainly do, yes.

JENNY BROCKIE: And what do you want?

DR CHARLIE CORKE: I don’t want a lot of intervention and certainly to end up in a nursing home unable to interact would, for me, be very bad.

JENNY BROCKIE: And who will have carriage over that plan?

DR CHARLIE CORKE: My eldest daughter has, is my enduring power of attorney in the Victorian act and I chose her because she lives out in the country. She's pretty clear when the horses get shot, she's pretty clear with the dogs, she doesn't postpone things and she's, as my other daughters have said she's tough like you dad. And they have actually said that they're pleased that I haven't asked them to do it.

JENNY BROCKIE: Ken, have you got a plan?

DR KEN HILLMAN: No.

JENNY BROCKIE: You haven't got a plan?

DR KEN HILLMAN: Well, well I have got a plan but it's not on paper and it's actually very difficult to put all the ifs and buts on paper. So I've had long discussions with my daughter and with my wife but it's very difficult to have it on paper.

JENNY BROCKIE: Zena, do you have a plan?

ZENA NAJM: Not on paper, I probably should.

JENNY BROCKIE: The strike rate here in the medical profession is not very good.

ZENA NAJM: I, I actually think it should be mandatory when you're renewing your driver's licence, I think it should be mandatory in that for everybody.

JENNY BROCKIE: Okay, Ric, have you got one?

DR RIC MILNER: I have got one and I have health fears that really terrify me so I've gone to a lot of effort to, I think, protect myself from those things and my fear is dementia. I've looked after people with dementia and I think it's a really tough thing and I've had a wonderful aunt die from dementia and it was like, it distressed me immensely. I think one of the other points that we really need to be clear about is an advanced care directive never comes into play while you can communicate your wishes and you can change your mind all the time. So you might say I don't want to be resuscitated and then suddenly think well, I've got an illness coming up, I wouldn't mind being resuscitated from that one. It isn't, an advanced care directive doesn't mean that you're handing your responsibility to your medical power of attorney. While you're able to make your decisions and communicate them.

JENNY BROCKIE: You can change them?

DR RIC MILNER: They're still yours and you can change them whenever you like.

JENNY BROCKIE: We're going to have to leave it there. It's opened up a whole lot of other areas that we could talk about as well and I'm sure we will at a future time. But thank you all so much for joining us tonight and for sharing your stories, really appreciate it. And that is all we have time for here but let's keep talking about this on social media. Thanks everybody very much.